Big Freeze 11 rolls into Flinders Street Station  

The Big Freeze 11 has arrived and FightMND is charging full steam ahead in the battle against motor neurone disease (MND). To celebrate, two Aussie legends have donned their brand new Big Freeze 11 Beanies – FightMND Co-founder Neale Daniher and the iconic Flinders Street Station. Yes! We found a giant inflatable Beanie big enough for Australia’s oldest and, in our opinion, most beautiful station. 

Honouring FightMND Co-founder, patron and 2025 Australian of the Year, Neale Daniher AO, this year’s launch celebrates Neale’s groundbreaking contributions and the incredible strength of the Australian community. Year after year, Aussies have united to fight the Beast that is MND, showing unwavering support and solidarity. 

For Big Freeze 11, FightMND is daring Australians to live it forward. Inspired by Danish philosopher Søren Kierkegaard’s wisdom “Life can only be understood backwards, but it must be lived forwards”, this philosophy resonates deeply with Neale Daniher’s reflections in his book When all is said and done. As Neale poignantly wrote, “I understand the wisdom of this, but right now I don’t have much forward left.” 

Living it forward means seizing the moment and daring to craft a better future for those still in the fight and in memory of those who can no longer fight. It’s a call to action that inspires courage, determination, and hope in the face of MND. 

The launch included our wonderful major campaign partners Coles Bunnings, AFL identities, players from Melbourne and Collingwood football clubs, stakeholders, partners, board members and supports. Each one turning it out to officially launch the Big Freeze 11 campaign ahead of the King’s Birthday clash when the Demons host the Magpies. 

FightMND extends its thanks to the incredible partners who helped bring the Big Freeze 11 Beanie to Flinders Street Station. Metro Trains Melbourne, Element Rigging, RISING Festival, Clement Stone Town Planners, Heritage Victoria, the Centre for Design and Innovation at Swinburne University, Department of Transport and Planning, the City of Melbourne and Giants Inflatables. 

This year FightMND is back to freeze the nation with activities planned right across this great southern land. 

Founded a decade ago by Neale Daniher AO, Dr Ian Davis, and Pat Cunningham, FightMND’s original Big Freeze launched on Queen’s Birthday in 2015. Though Dr Davis and Pat’s wife Angie Cunningham have since passed away due to the disease, their legacy lives on in the continued fight against MND. FightMND continues to fund groundbreaking research into cure and care for those living with this devastating condition. 

With more than $115 million invested into MND research and support projects, FightMND has made extraordinary progress in helping those affected by MND and their families. This incredible journey is powered by the generosity of the Australian public, partners, and government support. While significant strides have been made, the summit of this Everest lies ahead, and your support is critical to help reach it. 

Grab Your Beanie and Join the Fight 

The BIG Big Freeze 11 Beanie will remain at Flinders Street Station until 8 May. Volunteers will be selling Beanies at Flinders Street Station weekdays during peak hours.  

If you can’t get to Flinders Street Station, don’t worry! You’ll still get a chance to support this incredible cause. Big Freeze 11 Beanies are available from 7 May from Coles, Bunnings, select Shell Reddy Express stores, or online at fightmnd.org.au  

Show us how you’re living it forward this Big Freeze. Snap photos with your Beanie, host events, or come up with creative ways to freeze MND. Share your efforts on social media by tagging @fightmnd and using the hashtags #BigFreeze11, #LiveItForward, #TeamUpForBigFreeze11, and #FightMND. 

Let’s live it forward this Big Freeze 11. Together, we can defeat the Beast. 

Creating Australia’s first MND Care Guideline 

Health guidelines play an important role in shaping the quality of healthcare in Australia. They aim to promote best practice and ensure everyone has the same standard of healthcare, regardless of where they live. 

Today, more than 2,000 Australians live with motor neurone disease (MND). However, the absence of national care guidelines means the standard of care for those living with MND can vary widely between urban and regional communities and even between states. This disparity can leave patients and their families navigating a fragmented and inequitable healthcare system.  

To help address this, FightMND has invested $2 million into the University of Adelaide’s Australian MND Guideline Development Project. Led by Health Evidence, Synthesis, Recommendations and Impact (HESRI) Unit Director, Professor Zachary Munn, this two-year initiative will help address key gaps in MND care. It will also support the creation of the Australian MND Guideline, Australia’s first evidence-based, nationally consistent guideline for MND care. 

Best-practice care is crucial for improving quality of life and managing symptoms in the absence of a cure. The Australian MND Guideline will offer standardised, evidence-based recommendations, supporting healthcare professionals, individuals living with MND, carers and policymakers. The project represents a significant step towards ensuring consistent, high-quality care for all Australians affected by the disease. 

Central to the development of the Guideline is the Guideline Development Panel. Composed of clinicians, researchers and people with lived experience of MND, the panel will provide vital insight and play a pivotal role in crafting the recommendations. Co-chaired by Professor Steve Vucic of Concord Hospital and Jo Whitehouse of MND Victoria, the panel will ensure the guideline is practical, implementable and responsive to the needs of the MND community. 

Work on the Australian MND Guideline will start in May 2025 and is due for completion in 2027. For more information about the Project, visit the Australian MND Guideline Development Project website.  

Help FightMND support those living with MND 

Motor neurone disease (MND) touches lives in profound and often devastating ways, affecting not only individuals but their families, caregivers and communities. At FightMND, we are committed to standing with those impacted by this disease by funding care research projects that make a difference, like the Australian MND Guideline Development Project. 

By focusing on care-centred research, we complement the work of state MND associations and organisations nationwide dedicated to improving the quality of life for MND patients.  

However, this fight needs more than just research. It needs your support. Your generosity helps us:  

• Fund essential care-focused research that drives the development of better MND care practices  

• Improve the accessibility and quality of care for MND patients across the country  

• Raise awareness of MND and its widespread impact on families  With your help, we can continue to push for progress and fight to defeat the Beast of MND. 

How Geelong does the DIY Big Freeze (and you can too!) 

There is a chill in the air and the icy excitement is building. It’s time for DIY Big Freeze season! Are you ready to make a splash, but need some help getting started? Don’t worry! we’re here to help. We’ve got the tips and tricks to help you bring your DIY Big Freeze plans to life. 

Whether you’re a seasoned slider or a first-time organiser, we’ve got the tips and tricks to help you make your DIY Big Freeze event unforgettable. 

Wondering where to start? Look no further than the Geelong DIY Big Freeze. What began as a small local initiative has now become one of the most anticipated days on the Geelong calendar. With three successful events under their belt, the Geelong team is gearing up for their fourth year of icy plunges, community spirit, fundraising, and non-stop fun. 

To help you kick off your own DIY Big Freeze, we turned to the Geelong team for their insider tips. Ready to bring your community together for a cause while creating a truly memorable experience? Here’s how to make a splash: 

1. Start strong. Build your Dream Team 

Every successful event starts with a strong foundation. In this case, your team is the backbone of your event’s success. Think of it as the ice machine keeping everything cool and smooth.  

• Build your core committee: Start with a close-knit committee of 5-6 people. These are your decision makers, your planners, your “lets-make-this-happen” crew.  

• Draw on volunteer power: Once the buzz starts, volunteers will flock like penguins to the ice! Make the most of their enthusiasm by giving them roles that match their skills, whether it’s setting up the slide or selling Socks and Beanies on the day. 

2. Roles that shine. Play to people’s strengths  

A well-organized team thrives when roles are clearly defined and tailored to each person’s talents. 

• Assign key roles: Identify important responsibilities, like social media management, slide structure coordination, and event logistics. This ensures no snowball is left unturned. 

• Empower your team: Let people own their roles. For example, have a tech-savvy teammate run your social media, while your ultra-organized friend ensures every logistic detail is nailed down. When people take pride in their roles, they’re more motivated to deliver their best. 

3. Choose Sliders that make waves 

If you’re planning a slide or dunk tank as part of your event who you ask to take the plunge can be a big draw for your event. The right sliders can be your event’s secret weapon. Make sure you grab attention and open doors with strategic choices. 

• Local celebs and dignitaries: Start strong with recognisable figures like your local MP or Mayor. Maybe consider reaching out to local news readers. Not only do these Sliders create buzz and credibility, they can also help provide guidance around council permits and other requirements. 

• Community stars: Mix it up with influencers and local personalities who’ll bring energy and excitement to the event. Who wouldn’t love to see their school principal take an icy plunge! Bonus points if they come dressed in quirky costumes for maximum fun! 

Every DIY Big Freeze event is unique. Think about what it is that sets your community apart and work to that. With the right team, clear roles and some star sliders, your event is sure to make a splash! Let your creativity shine and enjoy the journey of pulling it all together!  

Get behind the Geelong Big Freeze! 

A huge thanks to the Geelong DIY Big Freeze team for sharing their tried-and-true tips! Don’t miss this year’s event: Geelong Big Freeze 4 is happening on 1 June at 12:30 pm at St Mary’s Anthony Costa Oval. For more details, visit their fundraising page and support this incredible initiative. 

Geelong DIY Big Freeze 2024

Dare to Do and bring the Big Freeze to your Community  

This year, FightMND is challenging Aussies to dare to do and join the fight against motor neuron disease (MND). Whether it’s hosting your very own DIY Big Freeze, joining a club’s Community Round, or donning your Big Freeze 11 Socks, every action counts. 

 

Get involved with the MND community

Lived experience of motor neurone disease (MND) is the personal knowledge and understanding that comes from living with MND or caring for someone who has it. It focuses on their experiences, thoughts, challenges and how they cope with the disease. It also covers their journey through health, disability or aged care services and how they interact with others in the community.  

What is the National MND Lived Experience Network? 

The National MND Lived Experience Network (LEN) launched in June 2024 with support of MND Australia and FightMND. Its aim is to increase engagement between people with lived experience and professionals working in the field.  

The LEN includes over 130 members from across Australia. It includes people living with MND, genetic carriers, and current, or former, carers. Each member brings their own insights and experiences of MND. In turn, creating a forum to improve understanding and support for those affected by MND.  

How LEN members get involved? 

People with lived experience bring valuable, firsthand insights into what it’s like to live with, or care for, someone with MND. Including them in activities affecting them and their loved ones is important. Their involvement ensures real-world challenges, needs and issues are addressed. This can lead to the creation of more effective interventions and policies.  

“Personal stories and experiences bring data and research to life and help connect the dots in our work.”  

(anonymous, MND researcher) 

LEN members are passionate about supporting projects related to: 

• care and support 
• raising awareness of MND and its impact on individuals and families 
• advocacy efforts 
• development of vital resources and information 
• advancing research. 

Since September 2024, professional groups have submitted more than 40 requests to engage with the LEN. Of our 130 members, 46% have participated in at least one activity. Members have made 200 contributions in 6 months. This involvement has help amplify the voices of those with lived experience.  

The LEN members recruited for our focus groups were fantastic, they were open and willing to share their experience.”  

(anonymous, professional group) 

The activities LEN members have participated in include: 

• online focus groups 
• working groups or committees 
• co-designing new projects or programs 
• being interviewed for media releases 
• helping to create or review educational, clinical, or information resources 
• participating in research studies 
• completing surveys to gather data 
• supporting applications for new grant funding. 

Early outcomes show that the LEN is making a meaningful difference for its members. It’s empowering those with lived experience to take a more active role in the MND community. It’s also fostering stronger connections between those with lived experience and professionals. In turn, this is creating valuable partnerships to build better understanding and support. 

“It’s a journey none of us choose but I am getting significant joy from being involved and for my contribution being valued….it allows my lived experience and my past professional experiences to contribute to further understandings of the MND journey.” 

(anonymous, LEN member) 

“I get to link with so many great people, professionals and people with lived experience.” 

(anonymous, LEN member) 

Connect with the LEN 

Are you an industry professional wanting to make a real difference in your work? Enrich your work by engaging with people with firsthand experience of MND. Submit a LEN engagement request on the MND Australia website to get started.  

Bracelets for breakthroughs: Hope’s story

Combining her love of football with her determination to create change, 11 year-old Hope Blythe is taking on the fight against motor neurone disease (MND) her way. A passionate Collingwood supporter, Hope has turned her creativity and focus into a mission to raise funds for FightMND. Reminding everyone that every act of kindness can have a huge impact in the fight against MND

The drive behind Hope’s fundraising comes from her family tradition. Every year, Hope, her twin sister Olivia, and her Mum, who are both Melbourne supporters, attend the Melbourne vs. Collingwood game. A match, and a tradition, that holds special significance to Hope and her whole family.

Hope has a special connection with Neale Daniher, someone she refers to as “one of her boys”. Her passion for AFL and its players runs deep. So much so that she often emulates on-field injuries, arriving at school with a moonboot, sling or bandage, depending on what she’s seen during each match. But, when it comes to MND, she sees it differently.

“Neale has done nothing to deserve this,” she explains, “and it could happen to anyone. We need to find a cure”.

Communicating in her own unique way, Hope uses her creativity and actions to make her voice heard. She began making bracelets as a way to combine her love of footy and her drive to raise awareness for MND. Despite facing challenges while tying the knots, Hope insists on doing every step herself. “If I don’t finish it, I haven’t made it,” she shares. A testament to her dedication.

Her bracelet making has captured the support of her school and community. Many parents have donated to get bracelets for their children as keepsakes. Each bracelet becomes a small but meaningful symbol. A way to honour those affected by MND and remind others of the importance of the cause.

For Hope, this journey isn’t just about raising funds. It’s about connection. Crafting bracelets opens conversations about a topic she cares deeply about. Her mum, Kimberley, reveals that while Hope does not talk much, her creativity and efforts speak louder than words. If given the chance to meet Neale Daniher, Hope would stand beside him as a show of strength. Or, she’d break the ice with a playful request to have a go on the Big Freeze slide!

Hope’s efforts are a shining example of how even the smallest actions can create ripples of change. With 87 bracelets and counting, she’s proving that passion, creativity, and determination have the power to make a difference. Through her work, she’s helping drive awareness, spark conversations, and bring us closer to a cure. 

Bring the Big Freeze to your Community

This Big Freeze, FightMND is daring Australians to take action and make a difference with Big Freeze in your Community.

Big Freeze in your Community is all about coming together to make a difference – your way. From selling bracelets like Hope, to hosting a DIY Big Freeze or just wearing your Big Freeze 11 Socks with pride. No matter what you choose, every effort helps in the fight against MND.

Funds raised help fund critical MND research and programs supporting those living with this devastating disease.

Are you ready to join us in the fight? Head to our Big Freeze in your Community page to find out how you can team up for 2025. Let’s take on the Beast that is MND, together!

Leaving a Legacy: Peter’s Commitment to Fighting MND 

Neale Daniher’s fight against motor neurone disease has inspired many Australians to stand with him. Among those is Peter, who has chosen to contribute to the fight against MND in a meaningful way. By including a gift in his Will, he is leaving a legacy that ensures research into treatments and, ultimately, a cure can continue. 

Peter’s generosity stems from a deep desire to make a difference. After a successful career spanning four decades, he began to consider how he could leave a meaningful legacy. Without children of his own, Peter discussed his wishes with his family and decided to dedicate his estate to causes that truly matter to him. 

This included FightMND. While he doesn’t have a personal connection to MND, he was profoundly affected by Neale’s public battle and advocacy. Witnessing the sea of blue beanies at the Big Freeze and learning about the devastating effects of MND, Peter felt compelled to join the fight. 

“I wanted to leave a legacy that matters,” Peter explains. “Neale’s strength and determination inspired me to do everything I could to help find a cure.” 

For Peter, this commitment is more than a financial contribution—it’s about being part of Team FightMND. “I hope that my gift will help us beat the Beast. Whether it’s $1 or $10,000, we’re all part of the same team trying to defeat this disease,” he says. 

Peter has always supported causes that have impacted him personally. But it was Neale’s courage that drove him to take action against MND. While he has never met Neale, he has shared beers with Neale’s brother Terry at the Balwyn Football Club and has frequented his sister’s café in Albury. This connection, however small, reinforced his decision to support FightMND. 

Peter’s gift will fund groundbreaking research, clinical trials, and ultimately, beat the Beast. It will support: 

• Ground breaking Research: Funding the most promising scientists working to develop treatments that slow or stop the progression of MND. 
• Clinical Trials: Ensuring potential treatments move from the laboratory to patients, giving hope to those battling the disease. To date, FightMND has funded trials benefiting over 600 Australians. 
• A Future Free from MND: Investing in a world where this insidious disease no longer devastates lives and families. 

Beyond his Will, Peter regularly donates to FightMND, ensuring his impact starts now rather than later. He believes in the importance of keeping Neale’s message alive long into the future.  

As FightMND continues to push for a cure, supporters like Peter play a critical role in ensuring research and awareness remain at the forefront. His story is a powerful reminder that we can all make a difference—today, and for generations to come. 

Including a gift in your Will 

Like Peter, you too can create a lasting legacy.

A gift in your Will to FightMND is the gift of helping us better understand MND. It is a fight of better treatments and therapies for people living with MND. It is an investment into a future without MND. 

Until 6 April, FightMND is offering you the opportunity to secure your family’s future with an online Will through Safewill, normally $160. 

Safewill’s simple platform provides step-by-step instructions, with each Will reviewed by a practicing Australian solicitor for peace of mind. After 12 months, a subscription fee will apply. Safewill’s terms and conditions are available on their website.  

If you would like to have a confidential conversation about the impact you can have on MND research long into the future, please reach out to Eloise Shepherd, our Gifts in Wills Coordinator at [email protected] or 1800 344 486.

The Stickland family freezes the day with the Hills MND Big Freeze 

The story of the Hills MND Big Freeze is one of gratitude and an unshakeable sense of community. After attending a DIY Big Freeze event in Garfield, Victoria, Sarah Stickland turned to husband Matt and said, “We could do this. We should do it after everything FightMND has done for us.” Matt, who has lived with motor neurone disease (MND) for over a decade, wholeheartedly agreed and what started as an event uniting the hills community in the fight against Beast quickly grew into something much bigger.  

Held in the regional community of Emerald, Victoria, the Hills MND Big Freeze brought together families, friends, neighbours and complete strangers. Together they raised awareness and nearly $113,000 for MND research and care initiatives. The event’s success is a tribute to the Stickland family and the strength of the community that rallied behind them. 

In recognition of their impact, the Hills MND Big Freeze was proudly named Event of the Year at the 2025 Cardinia Shire Council Australia Day Awards. A moment that encapsulated not only the Stickland family’s vision but the collective strength of a community united in the fight against the Beast.  

To learn more about the event and the work behind it, we spoke to the Stickland family about their experience in hosting their very first DIY Big Freeze event. 

What inspired you to host a DIY Big Freeze event? How did the community respond to the challenge?  

With MND having a direct impact on our family, we have always been keen to support fundraising efforts. So when we attended a DIY slide event in Garfield, Victoria we were inspired.  The community feel, the funds being raised, and the fun that everyone was having was enough to make us decide that this would be fantastic in our local area.  The Hills community embraced the idea.  We had so much support and more local identities putting their hand up to slide than we could accommodate! 

Can you tell us how the event went? What was the overall vibe of the day?  

The event was brilliant.  I still have people talking to me about the day 6 months later.  It gave the community an opportunity to come together, have a great day out and all for such a wonderful cause. Everything that we had planned came together so successfully.  We had an amazing group of volunteers that worked tirelessly throughout the day selling beanies and promoting raffles and auctions.  All the sliders we had fully embraced the day with costumes and smiles.  We had face painting, live music and plenty of food and drink options. It was so much fun. 

In the weeks leading up to the day, we also had a couple of local identities who were selling beanies right across the Hills Community, at local football and netball matches, supermarkets and even outside the local newsagents. Without their help, we would not have raised as much as we did. 

We also involved the local primary schools to have a competition as to who could raise the most money per student. One local school, Cockatoo Primary, raised over $12,000 alone! 

Were there any standout moments or memorable highlights from the event?  

Announcing the final tally of $113K was a highlight for us.  We went into the event with expectations to raise $20K, and the community support of the event blew us away.  It was also an incredible moment when we looked out across the event to see a sea of blue beanies filling every available space.  Very overwhelming! 

How did the support from FightMND help you in planning and hosting your event?  

FightMND were fantastic.  They were there every step of the way offering assistance and support.  The online portal to set up the sliders was simple to use and very effective to share with the online community.  We even had support from Lynne [FightMND Fundraising Director] on the day which was amazing; and the amazing Ian Cohen [FightMND Media Liaison] volunteering his time to come and MC the event. 

Looking back, what advice would you give to others thinking about hosting their own Big Freeze event in their community?  

Do it! You will be amazed by the number of people that want to support the cause.  It is also such a great opportunity to bring the community together. 

Brad from the Garfield Hotel had suggested that the secret is to try to make it a community event; that was great advice. 

What’s next for you and the community after the Hills MND Big Freeze? Are you planning to bring it back this year?  

We were fortunate to win not only the Emerald Village Association Event of the Year, but also the Cardinia Shire Event of The Year.  This recognition and accolade has driven us to gear up again for the Hills MND Big Freeze 2025.  We have commenced planning and now have even bigger fundraising targets. 

Dare to Do and bring the Big Freeze to your Community 

This year, FightMND is challenging Australians to dare to do and team up for Big Freeze in your Community.

Big Freeze in your Community is all about uniting your friends, family, teammates, or your community to take on MND your way. Host your own DIY Big Freeze , join your club’s Community Round, or wear your Big Freeze 11 Socks. Each action helps in the fight against MND. Funds raised through Big Freeze in your Community will support vial MND research and programs helping those living with MND. 

Are you ready to dare to do? Head to our Big Freeze in your Community page to learn about how you can get involved in 2025. Together, we can beat the Beast that is MND. 

Five ways you can bring the Big Freeze to your Community 

Have you ever watched the Big Freeze at the MCG and wondered how YOU can bring the freeze to your community?  

This year, it’s YOUR time to step up and freeze every corner of the country with Big Freeze in your Community! It’s your chance to get creative, have a blast, and make a real impact in the fight against motor neurone disease (MND). 

Sure, we all know the Big Freeze slide, but what if you’re looking to do something a little cooler? Look no further! Here are five different ways you can bring the Big Freeze to your community in 2025: 

Dare your boss or principal to take on the ice bucket challenge 

Time to throw down the gauntlet! Challenge your boss, school principal, club president, or even that one friend who always says no to dares to take on the ice bucket challenge. Here’s the twist. Let the community decide who gets doused next! The more people you get to join in, the more funds you’ll raise for MND research and care projects. It’s cold, it’s hilarious, and it’s for a fantastic cause! 

Brain freeze for a cause with a Big Freeze Trivia Night 
Ready to test your knowledge and have a laugh? Host a trivia night with a frosty theme! Set it up at your local pub, community centre, or even a school hall. Spice it up with questions about cold weather, the Big Freeze, and MND awareness. Throw in some icy-themed prizes (snow globes, anyone?) and let the teams battle it out to be crowned the ultimate Brain Freeze champions. Bonus points for frosty costumes! 

Strut your stuff with a cold weather costume parade 
Why just walk when you can strut in style? Grab your warmest, wackiest, most outrageous cold-weather outfits and join the Cold Weather Costume Parade! From snowmen to penguins to winter superheroes, the sillier, the better! Everyone can join in and spectators can donate to cheer you on as you freeze for a cause.  

Make a splash with a polar plunge 
Who’s up for a real chill? Get your friends and community together for the ultimate polar plunge at your local pool or beach. It’s not just about the ice-cold water. It’s about making waves in the fight against MND! Dive in, raise funds, and make it the coolest event of the year. Trust us, nothing feels quite as exhilarating as taking a chilly dip for a cause that matters. 

Get your feet in the game with the wear your Big Freeze 11 Socks Day 
Want to keep it simple but still make a big impact? Organise a Wear Your Big Freeze 11 Socks Day at your school, office or sports club. Everyone rocks their Big Freeze 11 socks for the day. You’ll be looking stylish, staying warm, and making a huge difference in the fight against MND.  
Don’t have socks yet? Head over to our Big Freeze 11 Socks page to get your gear! 

BONUS! The great icy bake off 

Calling all bakers! Time to get frosty in the kitchen. Gather your friends, family or neighbours and have an Icy Bake-Off! Create cold-themed treats like frozen cupcakes, snowflake-shaped cookies or ice cream cakes.  

Hold a tasting event where people can sample these frosty delights in exchange for donations. It’s a win-win: tasty treats and funds for MND research! 

Ready to dare to do and team up for Big Freeze in your Community? 

There are many different ways you can dare to do and bring the Big Freeze to your Community in 2025. Every event and every gesture, no matter how big or small, helps us move closer to a future without MND. 

Join FightMND today, and together we’ll make 2025 the biggest freeze yet. Head to our Big Freeze in your Community page to find out how you can get involved! 

Supporting MND Care: Meet Dr Min-Yin Yap

In honour of International Women’s Day on 8 March, FightMND is celebrating the inspiring women working behind the scenes helping drive the fight against motor neurone disease (MND). Today, we’re introducing Dr Min-Yin Yap, FightMND’s Care Grants Manager. With a deep commitment to helping those supporting those living with MND, their families and their carers, Min plays a key role in directing funding for care programs and research. 

In this interview, Min shares her professional journey, the importance of community support and the tangible impact of her work in the care and research space. She reflects on the challenges of ensuring equitable care for all and how her diverse professional background helps shape her approach to tackling complex problems. 

What is your role with FightMND? What does it involve, and what is your favourite thing about it? 

I am FightMND’s Care Grants Manager. My role involved overseeing our Care Program, which focuses on improving the lives of people affected by MND in Australia. This includes funding targeted support for people with MND, care-focused research and the development of national care guidelines. 

My favourite part of the role is seeing tangible outcomes. Some investments can make a significant difference to people affected by MND in a short amount of time. I also appreciate that, more and more, research and care decisions are being guided by the needs and priorities of people living with MND, rather than being solely driven by experts. 

What did you do before working with FightMND? How does your professional experience contribute to your current role? 

Before joining FightMND, I worked as a biochemist in both academia and industry. However, research wasn’t the right fit for me, so I transitioned into roles that supported researchers in grant funding and project management across different sectors, including manufacturing and wildlife health. 

My background in biomedical sciences has helped me understand MND, while my experience in grant management and stakeholder engagement supports my current role. A brief stint at a women’s health research centre exposed me to healthcare inequalities in Australia, which is relevant to the care of people living with MND. I’m not an expert in this field, but my diverse experience allows me to ask the right questions, identify issues and find solutions. 

What are you currently working on for FightMND? 

We’ve recently funded the development of MND care guidelines. My hope is that, in two years, we will have a set of recommendations that will improve MND care in Australia and reduce the inequities we currently see across the country. 

We’re also working on a community survey in collaboration with MND Australia. The survey aims to identify the needs and priorities of people living with and affected by MND. It was co-designed with those affected by MND, clinicians and researchers. The results will be checked by the same group. We will use the findings to inform our updated care strategy later this year, ensuring it reflects the voices of people living with MND. 

Your role involves working closely with organisations supporting those living with MND. How important is the support of the Australian community in the work that you do? 

The support of the Australian MND community is crucial. I’m not an expert in MND care, so I rely on the community to identify gaps in the current health, disability and research systems. The conversations I have with people affected by MND help me make informed decisions about where to direct funding to areas that need attention or improvement. 

Help FightMND support those living with MND

At FightMND, we recognise that while the search for a cure continues, the daily lives of those living with MND are full of challenges. That’s why we’re committed to investing in initiatives to improve the care and support for people living with MND, as well as their families and caregivers. 

By focusing on care-centred research, we complement the work of state MND associations and organisations nationwide dedicated to improving the quality of life for MND patients. 

However, this fight needs more than just research. It needs your support. Your generosity will help us: 

• Fund essential care-focused research that drives the development of better MND care practices 
• Improve the accessibility and quality of care for MND patients across the country 
• Raise awareness of MND and its widespread impact on families 

With your help, we can continue to push for progress and fight to defeat the Beast of MND. 

Volunteering to raise awareness: Di’s story 

When Frank Glynn retired, he and his wife Di, started to make plans for life after work. A fit and healthy man who ate well, Frank was looking forward to the future. Highest on the bucket list was trip to Ireland, where his father grew up. 

In 2020, things started to change. Frank noticed a change in his left hand and arm. He didn’t have the strength that used to be there. His grip wasn’t quite as strong. Wanting answers, Frank began researching his symptoms and suspected he might have motor neurone disease (MND). His diagnosis was confirmed shortly after. 

Di remembers Frank researching MND relentlessly, wanting to understand what life had in store for him.  

“Being diagnosed with MND is absolutely something that you cannot comprehend. That you have a life sentence, no cure and an average life span of 27 months,” explains Di. “You have to comprehend what life is going to be like. What you will no longer be able to do”. 

Frank and Di hid his diagnosis from their family until people started to comment on his deteriorating hand. 

“My husband was a very strong man. So unbelievably strong and stoic. But, when we told our children of what was going to happen, it was heartbreaking,” she said. “They have experienced the worst thing, watching a parent die. They were too young to have to go through that”. 

With the help of carers, Frank’s family rallied around him to provide him with care and support throughout his illness. Di often reflects on Frank’s incredible strength and the way her children stepped up, even though they were young and should have been enjoying their time as young adults. 

Frank died from MND at the age of 64, three years after his initial diagnosis. Di deeply feels his loss every day. 

Building connection and volunteering to raise awareness 

After Frank’s diagnosis, a mutual friend reconnected Di with Jan Daniher. They first met many years earlier when the Daniher family lived in Western Australia. With a shared experience of living with a loved one with MND, Jan offered invaluable support during Frank’s battle. This connection inspired Di to get involved with FightMND and volunteer for the Big Freeze. 

Volunteering with FightMND has given Di the chance to share her story, raise awareness about MND and contribute towards a world without MND. 

“Surprisingly, not many people know what MND is. I want to help ensure fewer families face the same heartbreaking situation we did,” she shared. “FightMND has done incredible work in raising awareness and making a real difference. I can’t imagine where we’d be without the passionate and dedicated people fighting to improve lives.” 

As a volunteer, Di found a platform to not only advocate for the cause but also meet others who share her connection to MND. 

“When you know someone affected by MND, you quickly realise how many others are facing similar struggles. Volunteering with FightMND has given me the opportunity to champion this cause. This is something everyone should do. By volunteering, you’re helping to make a real impact in the fight against MND.” 

“A life is worth more than just the last 27 months,” Di said. “Our fight isn’t just for those directly affected by MND. It takes a community to defeat this beast. Volunteering is one powerful way to make a difference.” 

Register to become a FightMND volunteer during Big Freeze 11 

Our volunteers sit at the heart of the Big Freeze campaign. Their support ensures we can continue to invest in critical research and programs to support those living with MND, their families and their carers.  

Will you dare to do and volunteer with us during Big Freeze 11? Learn more about the work of our volunteers and how you can get involved on our Volunteering page.